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Title: What did I do? Post by jimyhertz on Jul 21st, 2007, 8:10am So I am PF for like two weeks. Wonderful! Then three in one night. The first thing running through my head on the way down the stairs at 0330 is "what the F*@# did I do wrong" I know there is no rhym or reason to this. It's just a thought; a feeling. The way my head works. Jimy |
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Title: Re: What did I do? Post by ClusterChuck on Jul 21st, 2007, 8:19am The better question is what did ANY of us do? The answer is NOTHING! But hang in there, and just be VERY glad for the pain free time that you DID have! Many would LOVE to have that pain free time, myself included! Remember, don't dwell on the hits ... Dwell and totally enjoy the pain free time that you do have. NEVER let the beast win, or even THINK he is winning! Chuck |
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Title: Re: What did I do? Post by E-Double on Jul 21st, 2007, 9:10am It happens.....hang in there and don't sweat it. |
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Title: Re: What did I do? Post by Redd on Jul 21st, 2007, 9:52am Jimy, It was great to meet you and your lovely daughter last night. The beast on the other hand... >:( No one invited him to the party or the after-party. Here's hoping this was just a fluke and the beast was just pissed that no one invited him to the picnic.... Keep us posted. |
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Title: Re: What did I do? Post by jimyhertz on Jul 21st, 2007, 10:21am It was great to meet you too, along with your daughter and son. We had a really good time. Thanks also to all of you who are here. Time for the parade at 10 if you can make it to Port Washington. The party is all day. I am JUMPING for joy (my wife thinks that's sarcastic; hmmm). The beast will never get me down. Not a chance. Thanks again, Jimy |
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Title: Re: What did I do? Post by cynjeep89 on Jul 21st, 2007, 10:39am Jimy, You did nothing wrong but I can totally understand why you would ask this question. During my first years of living with CHs, I tried everything to try to figure out what I was doing wrong. I eliminated so many foods that I found myself eating only lettuce and drinking water....didn't work. I quit smoking and avoided alcohol....didn't work. I stayed home and tried to lead a quiet and stress free life.....didn't work. Went to see my family doctor, dentist, eye doctor, ENT doctor and anyone else who I thought could help me....didn't work. Plodded my way thru 6 neurologists, tons of tests, med trials, etc.....didn't work. Thank goodness I finally found a great neurologist. Guess what I am trying to say is to try to change your way of thinking. Instead of wondering what you did wrong, arm yourself with information of what you can do that is right for you. I think many here have a ritual for dealing with the beast. Mine is to always have O2 within reach during my cycles. My freezer is loaded with ice gel packs and I always have meds on hand if the cycle is bad enough to need to go on a prednisone taper. The motto, Be Prepared is what I live by. Focus on the pain free time (which I hope you get lots of) and enjoy it to the max! |
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Title: Re: What did I do? Post by jimyhertz on Jul 21st, 2007, 5:34pm Thanks cynjeep89, That is the path I was taking. Constantly questioning; is it this or is it that. I have read enough from you all and the Med journals to know that is not how it works, but it seems there must be something. Even if there is not. It "seems" there should be. What a rediculous circle. I guess if nothing else it keeps things interesting in a twisted sort of way. Back to the party for me now. Bye the way; I believe I did find a great neurologist. She is helping me to arm myself. I don't like the drugs much. It all stems from working around them, but they are the catch-all back up. Thanks, Jimy |
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Title: Re: What did I do? Post by 1stdonna on Jul 21st, 2007, 11:47pm Hey Jimi.....glad to meet you and glad that you are here among friends who know what you are going through. Through shared experience, we have a pretty good handle on what works for most people and what might work for those few that can't find relief in the most common "helps". Perhaps if you would tell us what you have tried, we might be able to make a few educated suggestions to take to your doc for approval. There is some relief in meds for many people.....and a lot for others. My son aborts his cycle with a Prednisone taper after 2 or 3 days days of ch. He's an episodic just as I WAS, with a cycle in the spring and one in the fall, each lasting almost exactly 6 weeks........he goes from 0 to Kip 8 pr 9 within minutes, just as I used to. Educate yourself by reading the many good articles in the left margin of this page and take this knowledge with you to your doc. Good luckl |
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